Increased pain after pudendal nerve block.

[Playablanca]

As a last resort I had a pudendal nerve block in my left buttock 17 days ago. The pain in the injection site is almost unbearable. I hoped this would turn my life around but it has just done the opposite. I am desperate for some pain relief tried all the neuropathic pain tablets but they didn’t work. . Would love to hear from anybody who has had similar experiences who could help please. Thank you

[kalecolbe12]

I decided against any procedures and I take a low dose of gabapentin at night,which helps a lot,however I can't take it during the day so doc added a small dose of Cymbalta and pain is way down.... You may need to go on one of these neuromeds for pain for a while ..they work much better than regular pain medications... Bonus with cymbalta is that it's an antidepressant and anxiety which both I have had after two and a half years of pain. Sorry you're going through this it's the worst believe me I know....

[Playablanca in reply to kalecolbe12]

Many thanks for your reply. I have tried both gabapentin and duloxetine but not combined. Took gabapentin 3 times a day felt so tired & couldn’t concentrate on my job. It’s worth thinking about combining the 2 as you do & just taking the gabapentin at night. I hope things continue improve for you Best regards

[anna1234567 in reply to kalecolbe12]

That’s interesting. Whats your dose of both and do you take Cymbalta in the morning. Thanks!

[kalecolbe12 in reply to anna1234567]

I only do 200 Gabapentin at night and I only do 20 mg Cymbalta around 11:00 a.m. but I'm only in on day 16 so I'll see how it works for me

[anna1234567 in reply to kalecolbe12]

Fingers crossed! Could you please give an update when you’re on it a bit longer? I’m grateful for every one here trying to help one another.

[Skye22]

I get Botox injections into pubirectalis muscle ( levator-ani syndrome) and injection sight is painful for a couple of weeks after.I find that injections don't eradicate pain but lessens intensity, lasts for about 3mths.

I take amitriptyline 50mg in the morning and 75mg at night which helps with pain and sleep is better.

Trying to manage different meds can be a nightmare it's finding what combination works best for you.

Hope you get some relief for your symptoms and stay strong.

[Playablanca in reply to Skye22]

Thank you so much You too x

[Desperateforrelief in reply to Skye22]

FYI- I have been on botox for 10 years. They get better as it goes along. I get them quarterly. Mine are into pudendal nerve area and obturator nerve area. (I have pudendal and obturator neuralgia). My doctor does not knock me out. Pain is excruciating for 30 secs. He says this is how he finds the best place to hit, it magnifies the pain I get. The worse the shot, better the pain relief. I am almost back to my normal life. I also get radiofrequency ablation to pudendal nerve - which along with botox gives complete relief for 2 1/2 months. They are going to do a ganglion impar radiofrequency ablation in Dec. I have transvaginal mesh complications, so a lot of scar tissue. Shortened vagina, excessive vaginal scarring. I don't tolerate the meds listed on this thread. We are all so different. I don't know how long you've been on botox, but I hope to encourage you that there is an accumulation effect. I know some women who have been able to spread them apart further and further as they go along. I wish you all the best, Ellen

[Skye22 in reply to Desperateforrelief]

My consultant also does the injections without anaesthesia. They press into the muscle where the tension is and that's where they put the injections. As you say it's a painful procedure but it's short lasting and the benefits of reduced pain is worth it.I also see my specialist physio whe does trigger point therapy and I find the combination of this and injections works for me.

Unfortunately due to covid my treatments at hospital has been put on hold and my pain has definitely increased. Recently received letter from consultant so my treatments will start again soon. Was in my treatment for about 6mths so had 2 rounds of Botox.

I also find having a positive attitude and acceptance of my conditions, (colitis /disffunctual bowel, & adhesions on bowel, bladder and pelvic area) helps a lot. I have suffered with symptoms for about 20yrs so I have had quite a long time trying different treatments.

It's so good to chat with others and share experiences, I don't feel alone and people on this site understand what you are going through. Wish you continued good health and thank for your post.

[Ddemarchi in reply to Skye22]

Hey, i have a question since you take amitryptiline. Which side effects have you noticed from it? I have vulvodynia and have been taking it for almost a year now. I used to take 12,5 but they upgraded it to 25 a day at night, and i feel some side effects, such as increased sweating (more than with the previous dose) and decreased libido. Did you experience that as well? Also some brainfog.

[Skye22 in reply to Ddemarchi]

Brain fog definitely!!! I had to play about with dosage to help with this so I was able to go to work. I took my night dosage(75mg) about 8pm this allowed me a decent sleep and not too drowsy in the morning. Morning dosage of 50mg I was fine no negative side effects.I have been taking amitriptyline for a good few years now so maybe my body is more tolerant, with no negative side effects.

Hope you are able to get dosage that works for you.

[Ddemarchi in reply to Skye22]

Thank you for your quick reply. I still get some pain, ive noticed its mostly at night when im stressed out. Im not sure if i really want to keep upping the dose, because i dont see medication as a miracle that will make all the pain go away forever. I feel that there will be pain sometimes and no pain other times out of nowhere, since its chronic…but i could be wrong. Would you say that amitryptiline took all of your pain away? Im always scared of upping the dose because of side effects, but if it truly makes it go away almost all the time then id consider it. Listening to doctors advice is sometimes hard, even though im pretty much friends with my doctor now and she says what i take it already a very small dose, but she isnt really suffering from this kinda pain..i am…what would you say about dosage? Does it really make a huge difference to from 25 to 50 for example?

[Skye22 in reply to Ddemarchi]

It's hard to say what dosage would be fine for others to take, it took a while for me to get a maintenance dose that was good for me.I find a lot of meds don't eradicate pain altogether more taking the edge off. I know what you mean about dosage I think there must be a cap on how much you can increase your dose

It's something best sorted out with your GP especially if taking other meds you would need to sort out how different meds react with others.

As previously posted for me it's a combination of meds, injections, exercise and diet.

I hope you are able to find what best works for you.

[pizon]

I am sorry to hear of your pain…I was never able to talk any meds for my nerve pain I tried all of the above that have been mentioned and more…I now take valerian root and hops 3 times a day I hope this helps

[Playablanca in reply to pizon]

Than you prizon I am willing to try anything to get my life back on track. Do you get the valerian and hops from a health shop.

[pizon in reply to Playablanca]

Because we live in the forest I get it deliver from Amazon I use the now brand valerian root and the natures way brand hops …I hope it helps you

[Playablanca in reply to pizon]

Thank you prizon I will look into this. Appreciate your support

[pizon in reply to Playablanca]

Keep me posted this is such a horrid condition it truly effects everyone differently just have to find the right combo for your self also try accupressure

[Desperateforrelief in reply to pizon]

I just ordered these, do you take at night? It said they promote sleep, I saw you said 3x day. So just checking.

[pizon in reply to Desperateforrelief]

Yes I find that they do not make me sleepy they eat the pain…I take 2 each at 11:00 am then with supper then at bed time try it on a day that you have nothing planed..they truly help me

[pizon in reply to pizon]

I also do yoga for pelvic pain dailyGood luck

[Meze]

Mine was very painful too and quite frankly did no good at all.I now manage the pain with a mixture of paracetamol and ibuprofen and do regular pelvic yoga,short walks and stand up more.Rest in-between and have lovely relaxing baths in the evening.My free physio ( MSK pain management) was set up through a referral from my Dr.after I pushed for it.Lay down anytime you are tired and take it very gently.Jope this helps! Sara xx

[Playablanca in reply to Meze]

Thank you Meze I do take paracetamol but can’t take ibuprofen Will look into the yoga and physio you mentioned. Appreciate your help x

[anna1234567 in reply to Playablanca]

You can also try Hypericum Perforatum 30C which really helped me for a while. I also take PEA and some people also take Agmatine. All supplements and easy on the body.

[Konagirl60]

Did the doctor doing the block use flouroscopy or CT guidance? This IS a must. It’s best that the injection use both anaesthesia and steroid. I’m sorry it didn’t help you.

I had a properly performed nerve block a year after my PNE started and it worked. I had felt electrocuted in my rectum and the nerve block stopped that.

I had another one performed by the US doctor who officially diagnosed me and I actually sat pain free for 18 hours. That block proved it was my pudendal nerve that was agitated.

Just wondering? Where is your pain? What does it feel like? Have you tried Nortriptyline at nighttime?

[tallandsassy]

I had to cancel a planned PN block because of another health concern. I know that the block is mainly a diagnostic tool for Pudendal Neuralgia but does offer pain relief and even pain elimination for some. The doctor I consult with does the block vaginally and I have read that that has a higher success rate than through the buttock. Has any one had a positive experience with a PN block? Thanks.

[Pattimoe]

I am so sorry for you and your pain 💗 I’m very glad that I decided not to do anything like that. But my journey has been rough and very similar to yours. I did get 3 different injections in different areas of the spine at the beginning because the doctors I went to were surgeons. No relief. Then, more recently, I received injections through the vaginal wall, unguided, into the levator ani muscle (pudendal nerve in there) which helped a lot after about 3 weeks. Now it’s 11 yrs later and I’m almost 100% relieved! I take Amitriptaline (prescribed for migraines) and CBD every day. That’s all! It was totally by accident that my nerve pain subsided. My GP is elated and thinks it was just the Amitriptaline that did it. I thought it was the daily CBD. whatever it is I am thankful every single day. Don’t give up! Keep trying different things, especially curable app!

[Playablanca in reply to Pattimoe]

Thank you for your kind words and support. I am truly glad to hear you have conquered this monster. I am very interested in CBD oil This has been mentioned to me before can you give me any advice on best brand and amount to take. Don’t worry I will be careful I know everyone ‘s different.Thanks again and have a wonderful life you appreciate it much more after hard times x

[Pattimoe in reply to Playablanca]

Purely by an email, I chose LiveGreenHemp because of a discount offered. Tried the oil first but did not like the taste. Now I buy capsules which are 25 mg each. And I wait for a sale which gives me at least 40% off! No matter what just make sure that they are reputable and you get Full Spectrum CBD. There are many different kinds, even for pets! But after I started taking them I felt so much better. Good luck and God bless 💕

[Playablanca in reply to Pattimoe]

Thank you Pattimoe. I have just looked on Holland and Barrett health store and they stock CBD capsules to this specification. Going to order some I’ll let you know how I go on. Many thanks x

[EffieT]

Sorry to hear you are in so much pain after the nerve block. I hope you find some successful treatment. It's awful to be in pain and not know why.I had a pudendal nerve block for diagnostic purposes a year ago and it created a new pain in my gluteal area. I am still wondering what happened. I live in Toronto, Canada. There is very little knowledge or interest in pelvic pain. After 2+ years of trying to get help, I am nowhere closer. My physio feels it might have caused a muscle spasm in my pubococcygeus.

If there is anyone who lives in Toronto, who knows a good physician, I would be so grateful.

[Desperateforrelief]

I forgot to mention that sometimes nerve blocks cause flares (pain gets a lot worse). My first few blocks were helpful. Then I got a bad flare. The doctor said this sometimes happens. I wonder if it is because they hit a nerve - such an innervated area. I had quite a few flares in the first few years, but none in the last 8.

[Ftm79 in reply to Desperateforrelief]

Hi! How do you feel now? Did you get improved? Who diaognosed you?

[Desperateforrelief]

I am doing much better. Radiofrequency ablation of the pudendal nerve is keeping my pain at a minimum, along with botox shots for pelvic floor spasms. If you have pudendal neuralgia I highly recommend radiofrequency ablation of the pudendal nerve. From 6-10+ down to 0-5 at the highest. I have more injuries than just pudendal neuralgia (obturator neuralgia, piriformis syndrome). Right now pain is on the upswing (shots due next week). It's a 5-6 piriformis spasms. In the beginning I could not sit for longer than 15 mins without severe pain. Now I can sit for hours. I like radiofrequency ablation over the the steroid nerve block because steroids have long term side effects against bones. Diagnostic blocks are not the same as long term blocks, different medications, but both in steroid family. Dr. Childs from Birmingham, AL does the botox shots and Dr. Winkler from Cahaba Pain Center, Birmingham, AL (HOOVER) does the ablation. I hope this helps!

[Agnies202]

Does anyone know a doctor in London who does pudental and obturator nerve radiofrequency ablation? I am suffering with some buttocks sacral area spasm, started from pain in groin. I took all kind of meds including Gebapentin Pregabalin Amitriptyline all kind of nsaid, have thee diagnostic injections in hips, Sacroiliac joints and spinal nerve roots. None of them hit the target but increased sensitivity. My butocks are just pins and needles cannot touch my pelvis my bladder is sucked into my abdomen and rectum is as if need to squeeze it all the time otherwise it could drop not literally of course, but makes me winder why I got this pressure on rectum perineum and sucked in abdomen muscles.

I am suffering one year with no improvement symptoms get worse